Wednesday, March 26, 2014

we're pals right......right?

I have returned from my latest trek out east.  Although this trip was much better than the last one (see here and here) it did bring with it less than ideal results.  I have mild rejection again.  Luckily since it is mild and my last bronch was good they are treating me with iv solumedrol, in other words 500 mg of iv steroids!  Oh what fun!!!! Hopefully this does the trick and rights my inner world.  I have grown quite fond of these puppies but unfortunately my inner cells, mainly those somewhat pesky immune ones, don't quite agree.  Oh well what can you do.  I continue to live my life enjoying each day and remembering that things are totally out of my control and quite unpredictable.

Anyway, in other news I have developed a bit of boredom.  I guess that is to be expected since I am not really doing much at the moment, but it also kinda sucks to feel so...blah, a lot of the time.  I am lucky though, since most of my time back in CO has been spent being sick or super sleepy or nauseous, I have only recently developed this boredom and in a few, very short, weeks I will be going on a marathon of trips.  When I finally settle back at home again it will be summer, my sister will be home and I can possibly get a job giving my something to do!  Until then I am stuck in this weird limbo, between transplant and getting back to real life (aka school!)
Thats all for now folks!
See ya later!

Wednesday, March 12, 2014

The New Me!

Hello there!
First off, and obviously most important :P, I am now writing, er typing, on a computer again!!!!!  My computer broke back in November and it took me this long to finally commit to buying a new one, then another 5 days until I decided to open it.  Yes I may have some issues with change, its no wonder I had some troubles with my lungs right at first!

Today marks the 5 month anniversary of my transplant!  Not that there is really anything special about 5 months but it is crazy to me to think that it has been 5 months already!  On one hand it seems so short and on the other it seems really long.

I realize I kind of left you hanging there with my hospital stay...sorry!  Things got worse with mr. crazy doc after my last post and we ended up putting in a request to be transferred to Childrens Hospital (where I normally go).  The transfer was very smooth and within 18 hrs of arriving at Childrens I was moved out of the ICU and back onto the regular floor with a plan in place to work on getting me home.  I also was able to get the IgG treatment I was needing.  It had been discovered at my last clinic appointment that my IgG (one of the antibodies in your blood that help with your immune system) level was way too low.  To solve this they give an infusion of IgG antibodies.  Unfortunately my insurance was giving us trouble so up until this point I had yet to receive my infusion, leaving me extra prone to infection (is it a coincidence that I ended up with pneumonia?)
As far as the blood sugar issues are concerned, the insulin drip was stopped pretty much immediately upon arrival at childrens.  The hourly sugar checks were stopped as well and I finally got a good nights sleep in the ICU no less (yes I was very tired)  I met with my usual endocrine team at childrens and we decided to keep my insulin regimen mostly the same although we switched my fast acting kind to an even faster acting one.  I have been home for about 2 weeks now and my sugars seem a lot better (also helped by the fact that I'm not sick anymore!) though now I am having lows quite often.  Like I mentioned before my sugars are very much a work in progress.

After a few days at childrens I was released and sent home to finish up my iv meds.  That was a bit rough as I had meds due every 4 hours, but we made it through.  I am now med free (well other than all the millions of pills I take, but that will be my life from now on) and feeling back to normal, actually better than normal!  I am no longer nauseous!  In fact the prednisone munchies have finally set in for me and I am hungry all the time!  It is a bit bazar as I will eat so much that I am uncomfortably full and yet I am still hungry.  I feel very much like the very hungry caterpillar and my food choices tend to resemble his! (think cookies, ice cream, candy, pizza!)  I also have more energy than I have in a long time!  I even went running a few times, and get this .......I liked it! (WHAT????)  Granted I didn't run very far, less than an 8th of a mile each time, but I can do it and after building my muscle mass back up I am betting I will be able to go farther!  (remember I am still recovering from my 20lb weight loss, I have gained 11lbs already!)

The biggest change I have noticed is mental.  I have finally come to terms with what has happened to me and that I actually can get better if I get sick and am able to function like a normal human.  I have realized that I actually can make plans for the future and there is a good chance that I will be there for it!  I guess after 22 years of knowing you will probably die young it is a wonder that it only took 5 months for me to switch my mind set to one of living.  Granted I could get rejection any day, or die of  a million other more normal causes but this time around I feel good until those happen and getting sick doesn't bring a new, lower level of, normal but instead a temporary discomfort followed by increased health!  I am also much happier (probably a lot due to the nice weather!) and very much looking forward to the future knowing that soon I will actually be able to do the things I want to do and simple tasks, like walking my dog, are actually simple!

welp, thats all for today folks!  So go out and!?!